Dad and Lyme Disease

Lyme Disease is apparently very nasty stuff – dad was recently diagnosed and now it’s taking him a long time to recover.  One month of antibiotics seems like intense treatment, but, talking to him, despite this intensity, I get the impression that he is frustrated over the lack of concrete knowledge/prognosis of the disease that would tell him with some certainty how soon before he feels better.  Initially he was told that it would take 10 days to feel better.  Then 2 months.  And now 2 years.

So I decided to do a bit of research on my own and see what’s up.  Here is what I found:

Disclaimer: For the record, I do feel a bit silly discussing this as I do feel completely out of my depth and I feel like a lot of my thoughts are probably incredibly naive.  Having said that, dad and I don’t feel like we have solid footing under our feet with respect to Lyme disease.  This is wrong.  This is also why I am framing the question as “How do we get to a point when a patients feels that they are getting the right treatment?” rather than “How do we cure Lyme disease?”  Although I do feel that the former question can be a strong impetus towards the latter.

The problem

What is the problem?  The problem is that I do not feel that dad has adequate understanding of what’s going on and is not convinced that the present course chosen is the best route forward.  Moreover, he questions recommendations made by his doctor as things that do not contribute to his recovery (not maliciously so).

What I think would make him (and me) feel comfortable is knowing the answers to the following questions:

  • Was the diagnosis complete?  If not, what are the limits of the diagnosis.  What are the cutting-edge techniques?
  • What treatments are out there and how are other patients responding to these treatments?  Does he fall into any specific profile?  What has worked for other patients in the past?

Education

First stop: WebMD – Lyme Disease Overview.  Not terribly informative.

Next: Wikipedia – Lyme Disease which lead me to Allen Steere, who discovered and named the disease.

It also looks like Allen is an editor of the Clinical manifestations of Lyme disease in adults on UpToDate.  I sent him an email to see if he wants to publish with us…  we’ll see what happens.

In the meantime, it became clear to me what I want to know:

  • Present state of knowledge:
    • Pathology
      • Mechanics of the Disease
      • Diagnosis
    • Treatment
    • Tracking progress/recovery

One of the main problems with combining “What I’d like to know” and the questions that I asked above is that there is a fundamental conflict: I am not a doctor.  For me to understand all the details may require a significant amount of effort, for which I do not have the time.  Moreover, it is not necessary in order for me to feel that proper steps are being taken.  I should be able to delve deeper into a field should I feel the need to become a specialist, but this should not be necessary for me to attain an adequate level of understanding to make me feel comfortable.  So, to this end, I am interested in:

  • How is it diagnosed?
  • How is it treated?
  • What are the results? (Aggregate data)
  • How does dad’s response fit into these results?

Is there anything I am missing?

Update: listing of Clinical Trials for Lyme Disease: http://clinicaltrials.gov/ct2/results?term=lyme+disease

9 Comments

Filed under Health, Lyme Disease, Medicine

9 responses to “Dad and Lyme Disease

  1. Dear Nikita,

    Firstly, I’m sorry to learn of your Dad’s diagnosis.

    I do think though that by reaching out on your Dad’s behalf in the manner that you have done is not a bad thing to do.

    With regards to “Is there anything I am missing?” , off the top of my head, you should both check out PubMed Central. You will find 2630 full article level public access Manuscripts relating to this disease.

    • nikitab

      Thanks Graham. PubMed was actually the first place I went, but the problem was the volume of information. I will definitely be using it though after this first general introduction. What is a good place to keep track of clinical trials?

  2. find a Lyme Literate MD. Do not look at CDC standards for diagnosis. At a minimum, get the ELISA test AND Western Blot even if Elisa is negative. If ANY DNA strands are positive, you DEFINITELY need to be tested by LLMD. Lots more you could learn. Join ILADs.

    • Thanks Sharon. He actually got tested and tested positive. Went through a treatment with antibiotics, so we are past diagnosis. Or do you feel he should be tested post-treatment? Thanks for the http://www.ilads.org/ information – didn’t know about it. Will pass it on to him. Much appreciated.

  3. Hello
    If he has a diagnosis of Lyme he is on his way to better treatment. I would suggest you still find a Lyme Literate Doctor in your area…research LymeNet or canlyme or Truth about Lyme, sites like this. Treatment is difficult and if he has coinfections getting in the way it is more challenging. There is alot of controversy about long term treatments, but hook up with other Lyme patients and you will discover it works. Google pam Weintraub and read her stuff or Dr. Joseph Burrascano and read his excellent information.

    Wishing you the best.
    Renee from LymeLiving.

  4. Update from my friend Haley – place where you can see clinical trials happening related to Lyme Disease: http://clinicaltrials.gov/ct2/results?term=lyme+disease

  5. Hi, I am very ill with Lyme have Erichlios,BArt many co-infections not on list.
    Such as F/M /cfids. ALso out 100 symtoms think have about 90 of them from bowel to bladder++
    Have severe bout with Uvetits which in there book 2cd page book,surprised to see connected with Lyme & can loose vision since had mild bout.
    Plus in ER they cut cornea/& even with dirty tip he used 10 times. By then was soooo. much pain.
    Said had migraine in migraine. I have had that & cluster. NOPE….He was on puter all could come up with…DUH huge mistake
    I have ben researching for 15 yr. weed out good/bad info. Have won scholarships voted into who-who.
    Started 10 days in hosp. Menigitis, all Dr, scratching heads around my bed???Bet was Lyme.
    If they just shot doxy in I.V> life but been say
    Few yrs back encephalitis which triggered non stop nausea till today. Sure another co-infection??
    UGH/ No 1 knew as before
    Yrs. just to get therelated/MS called SISTER OF.

    I asked from Kaiser paperwork, after another 10 yrs.Only time tested positive across board Elisa, pos./Weater Block high & positive/Also AntiBodies.(BTW took me1/2hr. to think names.ha
    When had small en=gerny but quite painful,they would ask me If 1 wanted med.??? I did my own research on,hundreds+ patients. With all pain illness,fatigue,so much more. The 1 thing 95% wanted to have brain functon fog,disfuntion of.

    After 20+ yrs finally this yr.treatedfor 6 wks. with pick line[ROCEHIN} DID HERX SOME AT END .
    NO BACK UP SO NOW HAV SIGNS LEADING TOWARDS (ALS)SCARY.
    Not sure anyone is able to keep going.When we get this far or what heck dues 1 do? I work to save next generation,hard for me,done for yrs.Know
    Now also battling Barretts, poss. Ovarian Cancer, Know pain this as sticking cutting knife in open wound. Had bleeding.
    Now I read this can be related to HV6. Which most of us carry.
    I have high EBV/all bands/ Higher positive ANA.
    usually any that type testing pos. /No Lyme now must be hiding now for sure,
    We have found mosquitos,most animals carry++ sy 80 species foun birds on make sents!!
    Sorry if errors having puter prob.
    I have so much more guess this is plenty.
    Now need help with Lyme & all c0-infect.
    thanks for your time,hope you read
    important info not to mention I need help at standstill. Went to I.D. dr. all he said could do he??His deal is AIDS. Only Dr. on my HMO.
    Thanks again,Karen Duffy
    Clearwater FL,

    • Hi, I like that you re smart & so interested.
      He & you are both right.
      We have no real clue.
      We all have diff. co-infect. Hard enough to find positive tests except for Bowen shows the trueLyme or really BB. I can`t even spell what we really have so Lyme(city) will have to do for now.

      If we knew what co-infections & how to treat with so many other parts to this puzzle.

      I feel & understand your Dad 1st yr. They gave me pic line after 20yrs. Yet, little to late he did not follow up which have to least try if works.
      Late stage Lyme which I know I am in not much to do for but what I call band-aid meds.

      You are sweet for caring & that should give your dad big boost!!!!! Knowing someone has his back.
      Being this s very lonely disease being NO ONE GETS IT!!!!! Huggggsssss, to all in need……
      Karen

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